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When It Comes to HIV Stigma, You Are the Sage You've Been Waiting For

November 29, 2016

Matt Ebert

Matt Ebert (Credit: Selfie by Matt Ebert)

I was asked to speak on World AIDS Day about the history of the AIDS activist movement, but my thoughts kept turning to something more contemporary -- that is, the current state of affairs regarding HIV stigma.

I live in the country. There are no long-term survivor groups, no meeting places for HIV-positive people, and when I need to see a doctor I get in my truck and drive forty miles. Chances are I will know more about new medications and their side effects than the infectious disease doctor who prescribes for me. We adapt, beautifully, to our surroundings.

I like solitude. I crave it actually. I stay connected via the internet, and I love research, but out here I live alone. I am older now, my city days behind me; I am in the "50 years and up" crowd that now represents the largest group of HIV positives in the country. We are aging out, but we are far from over. We still have so much to teach the world, and so much to learn; we are ourselves to know.

I am often asked how I deal with loneliness and isolation. The secret is you don't deal with it; you embrace it like an old friend. The same is true for stigma. I don't push it away, I embrace it. At a certain point in my meditation on loneliness and isolation, it occurred to me that stigma is not something we can do away with so easily. Disease and death, so inevitable in every life, is near universally stigmatized. And, while it is important to counter them with education and love, equally and sometimes even more important, there is work to be done inside you too.

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If I am angry or broken, I cannot teach someone to fear me less. If I am frustrated, I cannot teach compassion. And, if I am not compassionate for the man who is afraid of HIV, how can I expect compassion myself? Certainly, fear of HIV is a healthy fear. How people react to that fear can be cruel and painful. If I recognize that cruelty as shame or fear-based, than I can open a window inside myself and find compassion for both institutions and individuals, and maybe effect real change.

How can I change that which appears immutable, such as discrimination and stigma? Both discrimination and stigma morph, they move through a populated forest like wildfire. I cannot change that fire, but I can change the way I perceive the trees, and I can change me.

If I am afraid of telling people about my status, I can work with that. I can remind myself that, by taking my antiretrovirals, I remain undetectable and therefore of minimal risk to anyone. By staying healthy and active, I am doing everything I can for others and myself. I am less of a risk; almost zero risk for transmission. Knowing this, living it every day, embracing my courage and reinforcing my willingness to walk the walk is the greatest tool I have to combat stigma.

It's another year, another World AIDS Day. With each new year comes a whole raft of changes and challenges for HIV-positive people. But the waters are calmer now, the smaller rapids can be ridden and the farther downstream we go the better we are at finding safe haven and dry shores.

There are two million candles now melted in their red votive glasses. The memory of their light, over two million angels worldwide, shall not be lost on the living. It is here for you to gather strength, warm yourself, secure your interior castle and defend against the intolerant and fearful among us. You are the sage you have been waiting for. To truly embrace what you do every day to stay undetectable and live healthy lives -- that is your practice and the best defense you have against the stigma and shame of others.

Read Matt's blog, Kick Rocks.

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